Tuesday, May 29, 2018
Infusions and IV Bruises
Camilla asked if I have any side effects from the immunotherapy, to which I replied, "None, except for the bruising that shows up a few days or even weeks later." In addition, I always start yawning at exactly the same place as we near Drammen on the day of getting my infusion, a sure sign that I'm getting Nivolumab and am not in the placebo group. I often need to take a nap as soon as we get home, and I'm often tired the next day. Other than that, nothing. If this is all I have to suffer for decades of life, I'll take my infusions dancing.
Sunday, May 13, 2018
Being Present: Into the Second Year
The house is all ready for Sunniva’s fifth birthday party,
and every single child we’ve invited is coming, except Imaan who is in
Pakistan. There will be seventeen children from ages 2-9 running around here
from 1400-1600 tomorrow and it will be a blast. An enormous Lithuanian is
currently finishing the job on the back deck, and I’ve finished the gardens
while Anette has done a phenomenal amount of baking and making rainbow-colored
jello cups for every child.
Cancer does not exist in my mind, my brain or my life
anymore. As I write these words I hear Dr. Dre rap about brain damage on the
NWA track Express Yourself, and I refuse to believe that I have any. If
anything, I’m stronger, smarter and in better shape than before my brain
surgery and subsequent rounds of radiation and chemotherapy. I just did 25
pushups and 100 sit-ups, a very modest workout, but enough to make me feel good
and to continue on the path towards the Fab Four Reunion this summer, and the
Norwegian Masters’ Champs in March 2019.
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Yesterday was epic. The actual party was a tremendous
success, and the after party was even more fun. Sunniva was in ecstasy the
whole time, running around the house squealing with delight at so many things,
with Johannes following around as best he could and screaming even louder at
times.
Of the fifteen kids we invited, two had to cancel due to
sickness at the last minute but they came by with presents anyway. Hala came
just as the party was ending but she stayed for another four hours with Zeitun,
Tufah, Faisal, Kristian, Heidi, Tuva and Thale, our best friends here in
Drammen.
Hala and Zeitun bonded over being refugees, Zeitun tried out
her Arabic and admonished Hala that she is too young to fast when Ramadan
begins in a few days. They also bonded over the difficult situation that Norway
puts refugees in after they leave the introduction program: having learned the
language and gotten a job, most refugees are forced to leave their homes and
make it on their own, a policy that none of us understand. As sweet as baby
Faisal is (everyone wanted to hold him) his namesake is another martyr in the
ongoing war for Somalia. Abdulqadir’s brother called him three days before he
died to tell him that he thought he was being targeted by the government, and
sure enough, he was murdered at 0400 prayers in the mosque in Mogadishu.
What do we as privileged white people say to this? How do we
comprehend the utter devastation and hopelessness Somalis - and so many other
Africans and poor people of all colors - have to contend with daily? OK, I’ve
survived Cancer but it hasn’t been that difficult; I’m not in danger of getting
shot or chased out of our lovely home.
1200
Have just had a perfect family moment crying from happiness
and the wellspring of emotion that the best music (in this case, Graceland)
always brings forth in me. Instead of hiding my tears, Anette made it a point
to show Sunniva and Johannes that Daddy was crying tears of joy, and then they
all gathered round me to sit on my lap and give me hugs and kisses, which
really are the best medicine for any ailment.
Johannes in particular found it hysterical that Mommy was
sitting on Daddy’s lap, so we repeated the stunt to the children’s delight, and
then had a role reversal where we all sat on Mommy’s lap. This helps me to feel
that there is still lots of joy left for us to experience as a family, even as
I felt that the peace and calm of holding little Faisal was an ephemeral time
that had passed us by forever. I found myself questioning whether I had fully
appreciated Johannes as a baby as much as I did when I drank in the smell of
Faisal’s head with my nose, his thick black hair warming my nose and
mouth.
But today has given me the answer – of course I did, or
Johannes wouldn’t be leaning his head on my chest right now as I write, nor
would he have copied my movements and the positioning of my hand under my chin
at the table in the moments preceding my tears. We are the perfect family,
Anette is the perfect mother, I am the perfect father, Sunniva is the perfect
daughter and Johannes the perfect son. And it will always be this way,
regardless of what happens to us in the future.
Through my tears I leafed through Sunniva’s two albums with
her sitting on my lap, looking back on so many wonderful memories of quality
family time both here and in America. Johannes’ first album will be ready in
June; hopefully Olivia and Chris can bring it with them to Bergen. As I return
to Nicole’s interest in the genealogy work I’ve done, I ask myself again what’s
the rush in returning to work full-time. Wouldn’t it be better to use these next
years to be fully present for my family while continuing to hone my writing
skills? That way I could make sure that the story of our extraordinary family
is told for all generations who follow. One moment at a time, one word at a
time. So far this diary is at 12962 words, and I have all my other blogs as
well. Where will it all end, and in what form? More will be revealed, Insh'Allah.
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